Confused College Student

[musik1414]

Hi everyone,
I'm new here, currently a junior in college.

About 4 months ago, I developed severe burning during urination and the feeling that I had to urinate constantly. I actually dealt with these symptoms for 2 weeks, hoping they would just go away. When I mentioned my symptoms to my dad, an orthopedic surgeon, he said that I most likely had a UTI. He called his friend, a gynecologist, and was told to prescribe me bactrim. I took a 3 day dosage and felt mostly better. Since I'd waited so long to get this treated, I was prescribed another 3 day dose of Bactrim which relieved all of my symptoms. I should mention that my symptoms developed the morning after sex with my boyfriend. I also did not have a urine culture done to determine if I actually had a UTI.

2 weeks later, again the morning after sex with my boyfriend, I got the same symptoms of burning during urination and feeling like I had to urinate constantly. My dad called a urologist this time, and prescribed me Cipro for 5 days. My symptoms were relieved after the Cipro, but came back a few days later even though I had not had sex recently. This time, I went for a urine culture and sensitivity analysis and STD testing and was prescribed Cipro before the results came back. The culture/sensitivity analysis and STD tests was negative. This time, however, my symptoms were improved but not totally relieved following Cipro. This same pattern happened a few more times - came down with symptoms, got negative urine culture.

I then went to see a urologist, who could not find anything wrong with me. I had a pelvic ultrasound, MRI, and urine testing done at the office. He said I probably had "cystitis" - which he said was an inflamed bladder. He prescribed me a low dose of Macrobid to take daily to prevent a bladder infection while I "healed" and told me to avoid caffeine and alcohol (kind of puts a hamper on the college life!). When I was still in pain a week later, he put me on Urimax.

The main symptom that I have now is pelvic pressure - I basically feel like there is a rock sitting on my pelvis. I have mild burning during urination some days. I've done as much research as I can on Interstitial Cystitis. I definately don't have some of the symptoms - I always sleep through the night without waking up to urinate, I don't feel like I have to urinate constantly although I have pelvic pressure instead.

Does anyone have any advice as to what I should do? I also came across pelvic floor dysfunction - perhaps I have that instead of or in addition to IC? I'm also 20 years old, and I thought IC was pretty rare among people my age. Any coping strategies, diagnostic input, etc. would be great. I go to a very competitive college in Philadelphia and this is just adding to my stress (which apparently makes symptoms worse!).

Thank you so much for any input!!!

Sarah

[traceann]

:) Hey there Sarah and :welcome: to the boards. I guess what I would do is bring up the possibility of IC with my doc and ask for further testing. There are a couple more that can be done, the potassium sensitivity test and a cysto w/hydro. Here's a link to the Patient Handbook here on the site that can give you info on the diagnostics used and the info on the above tests -

http://www.ic-network.com/handbook/


I didn't have all the "classic" symptoms either, for example pain with sex, not a problem for me. The most I ever noticed was feeling like I had had very vigorous sex the next day, after having sex with my huband the night before. But, it wasn't anything to raise red flags for me at all. It wasn't until I started to have pain while urinating that just kept growing to the point it was like peeing broken glass, and my urethra felt like it was in a spasm, is how I described it to my doc. (it in fact was, lol) So, he gave me Ditropan. That helped a bit, most of the pain was gone, but frequency still up and spasms still there. Then after a couple real UTI's, the IC came on full swing including my bladder even more in on the act than it had been previous.

So, I would definitely raise it with your doc, that's what I had to do, otherwise I do not think his brain would have gone on to IC. Diet can also be important to helping your bladder. Most of us are diet sensitive, I know I was in the beginning. I too was given a very short "list" of things to avoid. After I looked a the food list here on the site, I realized I was still doing harm by eating what seemed to be "harmless" foods, ugh. :cussing: Most just follow the "usually ok" list for 3-4 weeks, or until their bladder starts to calm down. Then you begin reintroducing foods one at a time and only every few days, to see if your bladder, to put it simply, likes it or not, lol. If I had a increase in symptoms, it went on my no-no list, to be retried at a later date. If it failed again, on to the permanent no-no list. Don't be discouraged at how restrictive it is in the beginning. That changes as you begin reintroducing foods. At least it's something to try while you are waiting to see what the heck is going on!! :) Here's the link directly to the foods list:

http://www.ic-network.com/handbook/diet.html

Very nice to meet you and hope to see you around the boards!! :)

[Sarojini]

Traceann gave you some good advice with the Patient Handbook link. Check it out :)

You're not too young to have IC -- there are lots of teenagers and college students here on the boards, and we even have cases of children as young as 4 or 5 being diagnosed with IC! Unfortunately, while the median age of onset is around 40 years old, the standard deviation on that is huge and people of all ages are diagnosed. I was diagnosed at age 29, but had symptoms for a long time before that.

I would speak to a urologist again. You may have to go to another one if the current one doesn't seem to want to take an interest in your case. Bring up the topic of IC and/or pelvic floor dysfunction and see what he/she says. It's possible to have one or both conditions (I got lucky and got both). It does sound like something is going on in your pelvis, that's for sure, and I think getting an accurate diagnosis will go a long way to helping you relax and also help you to get on medications or perhaps pelvic physical therapy (prescribed for PFD) so you can feel better!!!

:welcome:

[sacausa]

I am 17yrs old (will be 18 in one month) and was diagnosed with IC at the age of 16, although my symptoms started at the age of 15. If you want to talk, or want more info. about my road to diagnosis, send me a private message. I also started out with the diagnostic tests that you mentioned and ended up having a lot more done later. I was finally diagnosed via a cystoscopy with hydrodistention under anesthesia. I was frankly suprised when it came back positive... because I only went for the procedure to rule out IC....

[dansfever]

Sarah welcome don't worry I have IC and I'm 21 I know how you thought but you have to roll with the punches so don't feel like nothing is rare it's really not a lot of IC patients are women here's a website to check out some more information
www.niddk.nih.gov
____________________
Veronica

[musik1414]

Thanks so much everyone for your replies!

I spoke with my father, and he did not want me to suggest the possibility of IC or pelvic floor to my urologist, as the urologist is a good friend of my father's and he felt it would be rude to suggest a diagnosis to the doctor.

Instead, I have an appointment in a month to see a different urologist. Dr. Moldwin in Long Island - I read some article that he'd written on the ICN website and he seems to specialize in IC. Does anyone know of him?

Also, thank you for the diet suggestions. I checked out the diet suggested by the ICN and ate foods off the "usually okay" list but still felt pretty crappy. So, instead, I tried eating only 2 very bland foods that I know cause me no problems: organic pasta with butter and cottage cheese. After eating this 2 food "diet" for a day, I literally felt 100% better. I have added a few foods back in slowly, and I still have no symptoms (the only symptom I had in the first place was constant pelvic pressure). So, perhaps my bladder just needed to calm down a bit before I could eat the other "usually okay" foods.

I read another post in this forum from a woman who also only had pelvic pressure and ended up having an irritated urethra not IC. Does anyone know if an irritated urethra could cause the food sensitivities that I have? The woman with the irritated urethra indicated that her doctor had put her on doxycycline. I actually used to take doxycycline daily for acne until last May. My IC-like symptoms began about 2 months after I stopped taking it, so perhaps the doxycycline was masking urethral problems? Just a thought. Although I have had odd voiding patterns for as long as I can remember (stop and start peeing). Anyways I mentioned this to my dad, so he prescribed a 2 week dose of doxycycline to see if it actually has any effect, as I will not be able to see Dr. Moldwin until December. Benefits of having a doctor dad - although it's really too bad he's not a urologist!!

In case anyone else has a case similar to mine, I'll definately update to tell what my diagnosis actually is once I get one.

Thanks again for all of the advice from this board. It really is a godsend!

Sarah

[Annie2]

Dr. Moldwin quite literally "wrote the book on IC'. We often recommend his book to newly dxed ICers. The book is The Interstitial Cystitis Survival Guide. It is sold here in the ICN Shop and is also available from other Internet retailers and bookstores. So you are fortunate in that you will be seen by one of the best-known IC authorities. You might want to check out his book in preparation for your appointment with him. It would certainly help to be knowledgeable about IC, tests used for dx, meds and treatments used for IC patients etc. so that you are better prepared to discuss all of this with him. I certainly hope it turns out you do not have IC.

The vast majority of those of us with IC do benefit from carefully following the diet. For many of us it takes a good 3-4 weeks of faithfully following the diet before our bladders calm down and we see the full benefits of stopping the consumption of bladder irritants. Even if you do not have IC, following the diet can be helpful for the symptoms you are experiencing. Even people with healthy bladders can be affected once in awhile by the foods they consume, especially if they are recovering from an UTI or are experiencing another related disorder. It certainly won't hurt to follow the diet, at least until you see Dr. Moldwin, and it just may help improve your symptoms. Many urologists are interested in hearing how foods affect your symptoms as this information can help in diagnosing problems.

Good luck to you. Rest assured you are going to be in the care of a highly respected IC authority.